Many of the elderly in nursing homes are very ill and have a reduced quality of life. Life expectancy is often hard to predict. Decisions about life-prolonging treatment should be based on a professional assessment of the patient’s best interest, assessment of capacity to consent, and on the patient’s own wishes. The purpose of this study was to investigate and compare how these types of decisions were made in nursing homes and in hospital wards. Using a questionnaire, we studied the (...) decision-making process for 299 nursing home patients who were treated for dehydration using intravenous fluids, or for bacterial infections using intravenous antibiotics. We compared the 215 patients treated in nursing homes to the 84 nursing home patients treated in the hospital. The patients’ capacity to consent was considered prior to treatment in 197 of the patients treated in nursing homes and 56 of the patients treated in hospitals. The answers indicate that capacity to consent can be difficult to assess. Patients that were considered capable to consent, were more often involved in the decision-making in nursing homes than in hospital. Next of kin and other health personnel were also more rarely involved when the nursing home patient was treated in hospital. Whether advance care planning had been carried out, was more often unknown in the hospital. Hospital doctors expressed more doubt about the decision to admit the patient to the hospital than about the treatment itself. This study indicates a potential for improvement in decision-making processes in general, and in particular when nursing home patients are treated in a hospital ward. The findings corroborate that nursing home patients should be treated locally if adequate health care and treatment is available. The communication between the different levels of health care when hospitalization is necessary, must be better. ClinicalTrials. gov NCT01023763 [The registration was delayed one month after study onset due to practical reasons]. (shrink)

Background Making the right decisions, while simultaneously showing respect for patient autonomy, represents a great challenge to nursing home staff in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation to dying patents in end-of-life. Objectives To study how physicians and nurses protect nursing home patients' autonomy in end-of-life decisions, and how they justify their practice. Design A qualitative descriptive design with analysis of the content of transcribed in-depth interviews with physicians and nurses. Participants Nine physicians and ten nurses in (...) 10 nursing homes in Norway. Results and interpretations Assessment of the patient's competence to consent to treatment is almost absent. The physicians build their practice on the principles of beneficence and nonmaleficence. Nurses tend to trust the patients' rejection of life support, even when the patients have difficulty speaking or suffer from dementia. Relatives were, according to the health personnel, included in decision-making processes to a very limited extent. However, futile life support is sometimes provided contrary to the physicians' judgement of what constitutes the patient's best interest on occasions when they are pressurised by next of kin. Conclusions The study reveals a need to improve decision-making routines according to ethical ideals and legislation. Conflicts between relatives and healthcare professionals in the decision-making process deflect the focus from searching for the best possible treatment for the terminal patient. Further discussion is required as to whether the concept of autonomy is applicable in situations in which the patient is impaired and dying. (shrink)

While researchers have examined the types of ethical issues that arise in long-term care, few studies have explored long-term care nurses’ experiences of moral distress and fewer still have examined responses to initial moral distress. Using an interpretive description approach, 15 nurses working in long-term care settings within one city in Canada were interviewed about their responses to experiences of initial moral distress, resources or supports they identified as helpful or potentially helpful in dealing with these situations, and factors that (...) hindered nurses in their responses. Using a thematic analysis process, three major themes were identified from the nurses’ experiences: (i) the context of the situation matters; (ii) the value of coming together as a team; and (iii) looking for outside direction. The work of responding to initial moral distress was more fruitful if opportunities existed to discuss conflicts with other team members and if managers supported nurses in moving their concerns forward through meetings or conversations with the team, physician, or family. Access to objective others and opportunities for education about ethics were also identified as important for dealing with value conflicts. (shrink)

Background Decisions on limiting life-sustaining treatment for patients in the vegetative state (VS) are emotionally and morally challenging. In Germany, doctors have to discuss, together with the legal surrogate (often a family member), whether the proposed treatment is in accordance with the patient's will. However, it is unknown whether family members of the patient in the VS actually base their decisions on the patient's wishes. Objective To examine the role of advance directives, orally expressed wishes, or the presumed will of (...) patients in a VS for family caregivers' decisions on life-sustaining treatment. Methods and sample A qualitative interview study with 14 next of kin of patients in a VS in a long-term care setting was conducted; 13 participants were the patient's legal surrogates. Interviews were analysed according to qualitative content analysis. Results The majority of family caregivers said that they were aware of aforementioned wishes of the patient that could be applied to the VS condition, but did not base their decisions primarily on these wishes. They gave three reasons for this: (a) the expectation of clinical improvement, (b) the caregivers' definition of life-sustaining treatments and (c) the moral obligation not to harm the patient. If the patient's wishes were not known or not revealed, the caregivers interpreted a will to live into the patient's survival and non-verbal behaviour. Conclusions Whether or not prior treatment wishes of patients in a VS are respected depends on their applicability, and also on the medical assumptions and moral attitudes of the surrogates. We recommend repeated communication, support for the caregivers and advance care planning. (shrink)

Familialism is a significant mindset within Singaporean culture. Its effects through the practice of familial determination and filial piety, which calls for a family centric approach to care determination over and above individual autonomy, affect many elements of local care provision. However, given the complex psychosocial, political and cultural elements involved, the applicability and viability of this model as well as that of a physician-led practice is increasingly open to conjecture. This article will investigate some of these concerns before proffering (...) a decision-making process based upon a multidisciplinary team approach. It will be shown that such a multidimensional and multiprofessional approach is more in keeping with the inclusive and patient-centred ethos of palliative care than prevailing practices. It will be shown that such an approach will also be better placed to deliver holistic, coherent and sensitive end-of-life care that palliative care espouses. (shrink)

Background: Despite the growing body of knowledge about surrogate decision making, we know very little about the use of ethical frameworks (including ethical theories, principles, and concepts) to understand surrogates’ day-to-day experiences in end-of-life care planning for incapacitated adults. Objectives and Methods: This qualitative systematic review was conducted to identify the types of ethical frameworks used to address surrogates’ experiences in end-of-life care planning for incapacitated adults as well as the most common themes or patterns found in surrogate decision-making research. (...) Findings: Seven research papers explicitly identified ethical theories, principles, or concepts, such as autonomy, substituted judgment, and best interest standards as guidelines for the research. Surrogate decision making themes included the responsibilities and goals of being a surrogate, factors influencing surrogates’ decision making, outcomes for surrogates, and an overarching theme of “wanting to do the right thing” for their loved one and/or themselves. Discussion: Understanding the complexity of surrogates’ experiences of end-of-life care planning is beyond the scope of conventional ethical frameworks. Conclusion: Ethical frameworks that address individuality and contextual variations related to decision making may more appropriately guide surrogate decision-making research that explores surrogates’ end-of-life care planning experiences. (shrink)

Background: Nursing home residents are a vulnerable population. Most of them suffer from multi-morbidity, while many have cognitive impairment or dementia and need care around the clock. Several ethical challenges in nursing homes have been described in the scientific literature. Most studies have used staff members as informants, some have focused on the relatives’ view, but substantial knowledge about the residents’ perspective is lacking. Objective: To study what nursing home residents and their relatives perceive as ethical challenges in Norwegian nursing (...) homes. Research design: A qualitative design with in-depth interviews with nursing home residents, and focus-group interviews with relatives of nursing home residents. The digitally recorded interviews were transcribed verbatim. Analysis was based on Interpretive Description. Participants and research context: A total of 25 nursing home residents from nine nursing homes in Norway, and 18 relatives of nursing home residents from three of these nursing homes. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Oslo, Norway. Findings and discussion: The main ethical challenges in Norwegian nursing homes from the residents’ and relatives’ perspective were as follows: (a) acceptance and adaptation, (b) well-being and a good life, (c) autonomy and self-determination, and (d) lack of resources. The relationship with the staff was of outmost importance and was experienced as both rewarding and problematic. None of the residents in our study mentioned ethical challenges connected to end-of-life care. Conclusion: Residents and relatives experience ethical challenges in Norwegian nursing homes, mostly connected to “everyday ethical issues.”. (shrink)

This article examines the involvement of residents and their relatives in end-of-life decisions and care in Norwegian nursing homes. It also explores challenges in these staff—family relationships. The article is based on a nationwide survey examining Norwegian nursing homes’ end-of-life care at ward level. Only a minority of the participant Norwegian nursing home wards ‘usually’ explore residents’ preferences for care and treatment at the end of their life, and few have written procedures on the involvement of family caregivers when their (...) relative is in the terminal phase. According to the respondents, most staff seem to comfort relatives well. However, several challenges were described. The study revealed a need for better procedures in the involvement of residents and relatives in nursing home end-of-life care. The findings emphasize a need to strengthen both the involvement of nursing home physicians and staff communication skills. (shrink)

In this article we report findings from a qualitative study that explored how doctors and nurses in nursing homes describe professional collaboration around dying patients. The study also examined the consequences this can have for the life-prolonging treatment of patients and the care of them and their relatives. Nine doctors and 10 nurses from 10 Norwegian nursing homes were interviewed about their experience of decision-making processes on life-prolonging treatment and care. The findings reveal that the frameworks for the professional collaboration (...) and organization of physicians and nurses prevent patient treatment and care complying with ethical considerations and the law. These conditions have a challenging impact on the care of dying patients and their relatives. (shrink)

BackgroundAs part of the research project “End-of-life Communication in Nursing Homes. Patient Preferences and Participation”, we have studied how Advance Care Planning is carried out in eight Norwegian nursing homes. The concept of ACP is a process for improving patient autonomy and communication in the context of progressive illness, anticipated deterioration and end-of-life care. While an individualistic autonomy based attitude is at the fore in most studies on ACP, there is a lack of empirical studies on how family members’ participation (...) and involvement in ACP- conversations may promote nursing home patients’ participation in decisions on future treatment and end-of-life care. Based on empirical data and family ethics perspectives, the purpose of this study is to add insights to the complexity of ACP-conversations and illuminate how a family ethics perspective may improve the quality of the ACP and promote nursing home patients’ participation in advance care planning.MethodsParticipant observations of ACP-conversations in eight nursing homes. The observations were followed by interviews with patients and relatives together on how they experienced being part of the conversation, and expressing their views on future medical treatment, hospitalization and end-of-life issues.ResultsWe found that the way nursing home patients and relatives are connected and related to each other, constitutes an intertwined unit. Further, we found that relatives’ involvement and participation in ACP- conversations is significant to uncover, and give the nursing home staff insight into, what is important in the nursing home patient’s life at the time. The third analytical theme is patients’ and relatives’ shared experiences of the dying and death of others. Drawing on past experiences can be a way of introducing or talking about death.ConclusionsAn individual autonomy approach in advance care planning should be complemented with a family ethics approach. To be open to family ethics when planning for the patient’s future in the nursing home is to be open to diversity and nuances and to the significance of the patient’s former life and experiences. (shrink)

BackgroundEthically challenging critical events and decisions are common in nursing homes. This paper presents nursing home doctors’ descriptions of how they include the patient and next of kin in end-of-life decisions.MethodsWe performed ten focus groups with 30 nursing home doctors. Advance care planning; aspects of decisions on life-prolonging treatment, and conflict with next of kin were subject to in-depth analysis and condensation.ResultsThe doctors described large variations in attitudes and practices in all aspects of end-of-life decisions. In conflict situations, many doctors (...) were more concerned about the opinion of next of kin than ensuring the patient’s best interest.ConclusionsMany end-of-life decisions appear arbitrary or influenced by factors independent of the individual patient’s values and interests and are not based on systematic ethical reflections. To protect patient autonomy in nursing homes, stronger emphasis on legal and ethical knowledge among nursing home doctors is needed. (shrink)

Background: Intravenous fluids and/or antibiotics are applied to only a limited extent in Norwegian nursing homes, and the patients are often sent to hospital in these situations. A transfer and a stay in hospital may be unnecessary strains for frail older patients. Given this background, a collaborative research project was initiated in a Norwegian county in 2009. A teaching programme was developed, which aimed to strengthen the awareness of ethics, assessments and practical procedures related to intravenous fluid and/or antibiotics among (...) healthcare professionals. Objectives: This qualitative study aimed to increase our knowledge of the ethical problems experienced by nursing home nurses in situations related to the administration of intravenous fluids and/or antibiotics. Research design: An exploratory design was used, and five focus group interviews were conducted with 26 registered nurses. A hermeneutic analytic approach was applied. Ethical considerations: This study was reported to the Norwegian Social Science Data Services in May 2010. The Regional Committee for Medical and Health Research Ethics approved the collaborative research project. Findings: The analysis showed that the nurses experienced difficult decision-making situations, which were interpreted as external pressure and internal pressure. External pressure emerged in interactions with patients and relatives. Organizational factors were also interpreted as external pressure. Internal pressure was interpreted as the nurses’ experience of feeling inadequate in situations where it was difficult to protect the dignity of patients. Discussion: These findings correspond with international studies, which show that ethical problems often arise during decision-making situations. Conclusion: In agreement with the definition of an ethical problem, we found that the nurses experienced uncertainty and disagreements about how situations should be managed. External and internal pressures related to intravenous fluids and/or antibiotics in nursing homes have not been reported in previous studies. Thus, these findings merit further exploration. (shrink)